In 2016, Susan Zappa, RN-BC, CPN, retired after more than 30 years as an HTC nurse coordinator at Cook Children’s Medical Center in Fort Worth, Texas. Now living in Oregon, Zappa remains active in the bleeding disorders community, participating in NHF’s Inhibitor Education Summits, Partners PRN module reviews and events sponsored by Hemophilia Foundation of Oregon.
WHY SHE CHOSE NURSING
As a child, I had read a lot of stories about nursing, and it had always appealed to me. When I made the decision to go to nursing school, people would say to me, “Oh, it’s such a hard job, and it doesn’t pay much,” but the second I started nursing school, I knew that I loved it.
AN HTC PIONEER
When I got out of school, I started working as a floor nurse at Cook Children’s Medical Center. After about five years, I switched to working in the outpatient clinic for oncology and hematology patients. This was in the early ’80s, and because the Dallas Children’s hemophilia program had become an HTC, the doctors in Fort Worth thought that we should become an HTC also. I remember saying to our doctors, “Somebody needs to be in charge of our hemophilia patients,” and they all turned to me, and someone said, “OK, that will be your job now.” At first, we were teamed up with Dallas, and I became the HTC nurse coordinator, but then later, we became an HTC of our own.
HOW FAR WE’VE COME
When I first started caring for patients with hemophilia, things were so different. For one thing, patients didn’t treat at home and they were not on prophylaxis. We had heard about it happening in Sweden, but it was not yet common in the United States and definitely not in Texas. Factor products were also nothing like they are today. They were extremely difficult to mix, and it was drummed into you that you couldn’t shake them, you couldn’t make bubbles. When I think back to what the products were like back then, compared to how they are today, it’s really unbelievable.
LETTING GO IS HARD
We would see patients from birth all the way into their 20s, until we had to “boot ’em,” and that was always difficult for everyone because we developed such tight relationships with the patients and their families. The physician I worked with had a difficult time letting go of patients. She did not want them to leave, and every year, she’d say, “OK, next year will be your last year, not this year.” I remember we had one patient who was still seeing us at the age of 27, and my doc would say, “Why is he still here?” and I’d say, “Because you won’t let him go!”
One of the things I loved about my job was teaching kids how to self-infuse at summer camp. It was really so thrilling for me, and it’s something they remember for the rest of their lives. In Texas, all of the HTCs sent their kids to one big camp, so we had about 140 boys with bleeding disorders. All these years later, I will meet someone who remembers that I was the one who taught them to infuse.
THE HEALING POWER OF FACTOR
We had a patient whose religion prohibited him from receiving blood products, and he got a terrible bleed in his knee that put him in a wheelchair for a year.
At first, his parents were firm that he couldn’t receive factor, but then a nurse practitioner read up on his religion a bit more and learned that if the parents brought their case to their church counsel, they might be able to get approval for their son to be treated. Also, the factor product he needed was now recombinant. So sure enough, church members came to our clinic and talked to us and they said yes. So we were able to start giving that kid factor and thanks to treatment and physical therapy, his knee finally did get better and he was out of the wheelchair. It was really wonderful to see.